Desperate families are raising millions of pounds every year to send their terminally-ill children abroad for ‘unproven’ brain cancer treatments which ‘do not work’, experts warn.
Overseas clinics are offering places on clinical trials for experimental drugs to young patients – but making them pay for every aspect of the care.
All have been told by NHS doctors that there is nothing more that can be done to slow the disease – so feel they have little other choice.
The medical centres – often in Mexico, Germany and the US – charge a high price, with families stumping up as much as £1 million. Most raise the cash via crowdfunding websites such as GoFundMe and JustGiving.
However, top brain tumour experts claim many of these clinics offer ‘unorthodox’ medicines and surgical procedures and sometimes ‘take advantage’ of families looking for a shred of hope.
Anthony Freeman’s family raised £246,000 to treat daughter Jasmine in Holland
In some cases, these treatments have a high rate of side effects, hospitalising some children, they say. And in many cases these therapies do not extend lives.
Some child brain tumour doctors told The Mail on Sunday they know of families who sought help from clinics which offered ineffective low-carbohydrate diets and cannabis oil treatments.
According to GoFundMe, around £500,000 is raised every year to fund private treatment and associated costs for children with one form of rare brain tumour alone, diffuse intrinsic pontine glioma (DIPG).
Our findings come after the Government announced last week it would spend £40 million on brain tumour research in an effort to improve the poor outcomes for the disease.
Brain Tumour Research is calling on the Government to use the money to fund more clinical trials for children with the disease, so parents are not forced to raise these large sums – or placed in extreme financial difficulty.
‘We know of at least five families who last year were raising money to travel overseas. The numbers taking these last-chance options shames the UK,’ says Dr Karen Noble, Director of Research at Brain Tumour Research.
‘Of course parents will travel the four corners of the Earth to find hope, but this hope must be based on science and clinical evidence. Our position isn’t one of criticism of the families, it is one of complete understanding and outrage that this situation has been reached as the UK slides down the list of countries where clinical trials are being instigated.’
‘Sadly the majority of overseas treatments do not extend the lives of children any more than standard NHS treatment,’ says Dr Fernando Carceller, consultant paediatric neuro-oncologist at The Royal Marsden NHS Foundation Trust.
‘And there are cases where children experience uncomfortable side effects while taking these drugs.’
Every year, around 16,000 people in the UK are diagnosed with a brain tumour. Roughly 400 of these are in children.
Fewer than a fifth of patients survive longer than five years after diagnosis.
Brain tumours are also the biggest cancer killer of children.
Clinical trials – which enable patients to access new, experimental treatments before they are approved – can offer some hope.
However there has been a 40 per cent reduction in new trials since 2017, due to a lack of funding and the impact of the Covid pandemic. News about experimental therapies often spreads through Facebook groups dedicated to brain tumour families.
Prior to the pandemic, experts say there was a surge in demand for an unproven procedure in Mexico which involved injecting chemotherapy drugs directly into the arteries that carry blood to the brain.
This was based on the theory that many cancer drugs are ineffective because they cannot pass the blood-brain barrier – a membrane filter which blocks unwanted substances from reaching the brain.
In one case, the British family of nine-year-old Lucy Moroney raised £300,000 in 2017 to send her to Mexico for the procedure.
However, less than a year after starting the treatment, Lucy died. There is still no high-quality evidence that the procedure benefited patients.
Experts say that, since then, there have been other new treatment trends that have led to parents travelling abroad.
‘I’ve had parents asking about ketogenic [low-carbohydrate] diet and CBD [cannabis] oil clinics for their children,’ says Dr Carceller.
‘These trends come and go but families will cling on to anything. They don’t want their children to miss out on an experimental treatment which could save them.’
He added: ‘The majority of physicians at these clinics would not take on children who are too unwell to benefit. But there are doctors out there taking advantage of the desperate situation these families are in.’
Unlike when going abroad, taking part in clinical trials in the UK does not cost anything.
Eight-year-old Rudi Abbot from Edinburgh was told by the NHS in 2022 that his brain cancer could not be cured, and was sent to Seattle in the US for an experimental immune-boosting drug trial after his parents raised £110,000.
Rudi remained on the medicine for just four months before doctors concluded it had no effect. He died less than a year later.
While experts sympathise with parents doing what they can to save their children, some question whether these crowdfunding ventures are being put to good use.
‘These are huge lumps of money we’re talking about,’ says Dr Carceller. ‘In some cases, it would be enough to open a new trial in the UK in itself.
There is also a risk the patient could fall severely unwell while abroad – placing the family in even greater financial difficulty.
In 2022, George Fox, 13, from Bedfordshire travelled to Los Angeles after his parents raised £300,000 on GoFundMe to get him on an unapproved cancer therapy.
However, during the journey, his condition deteriorated and he was taken into emergency care. He never began the treatment. The family were left with a £500,000 medical bill, paid by raising another £200,000 through crowdfunding. He died months later.
‘Families are away from their support network and do not have the NHS if a child deteriorates overseas,’ says Prof Darren Hargrave, a paediatric neuro-oncologist at Great Ormond Street in London. ‘They may find they face unexpected and massive additional costs and stress.’
However, there are some children who do benefit from travelling abroad for treatment.
In 2014, the parents of five-year-old brain tumour patient Ashya King removed him from NHS care and travel abroad instead.
Ashya had successfully undergone surgery to remove the tumour but the hospital planned to treat him with radiotherapy to ensure the cancer did not return.
Naghmeh and Brett King wanted their son to get proton beam therapy instead, a similar treatment to radiotherapy which is thought to have fewer side effects, but was not offered on the NHS at the time.
Ashya was taken out of Southampton General Hospital and the family travelled to France. This sparked an international manhunt which resulted in the parents being arrested in Spain.
But the High Court eventually ruled that Ashya could get proton therapy in the Czech Republic. A decade later, he is still alive and the NHS now offers some brain cancer patients proton therapy.
Experts say these cases are rare and that the blunt truth is that, in many cases, there is nothing that can be done for patients – particularly those with DIPG tumours.
‘When I see children with these tumours, I want to make sure the child is cared for,’ says Prof Hargrave. ‘We want to make sure they don’t suffer and that the family is supported.
‘We might talk about experimental trials as an option, but we’d be honest about the chances of trial therapies working.’
Experts agree though that it is crucial the Government makes more funding available for brain cancer clinical trials in the UK.
‘Trials are not a panacea but they are the best solution we have,’ says Dr Carceller.
‘The more patients we can get on trials in the UK, the greater chance we have at finding new cures.’
£250,000 TRIAL DRUG WAS IN VAIN
The first sign that seven-year-old Jasmine Freeman was anything but perfectly healthy was when she began to experience double vision in February 2023.
Her optician in Bracknell, Berkshire, could not find anything wrong with her eyes, so, several weeks later, Jasmine was sent to hospital for an MRI brain scan.
Jasmine Freeman developed incurable midline glioma and died in January, less than a year after her diagnosis
Her father Anthony, 37, says he got the news that night: Jasmine had a brain tumour.
The next day, a neurosurgeon further explained to Anthony and Jakki, Jasmine’s mother, that she had an incurable midline glioma.
‘We were told that she likely only had 12 to 18 months even if she underwent radiotherapy,’ says Anthony, a former operations manager at Heathrow airport, who is separated from Jakki. ‘I refused to believe that there was simply nothing that they could do.’
Anthony researched experimental overseas treatments and found a drug called Onc-201 being tested in the US and the Netherlands. The family raised £246,000 via GoFundMe for the treatment but Jasmine died in January 2024, less than a year after diagnosis. Anthony says: ‘We wanted to keep her with us as long as possible.’